Standing Up for My Right to Have a Support Person at Medical Appointments

It’s 2021 and my yearly echocardiogram and stress test appointment for my heart is coming up. The nurses call me and tell me what to expect at the appointment. When they tell me I can’t bring anyone in with me during any of my appointments, I freeze. I explain that I need a family member in the appointment with me. They tell me that it’s the rule and they will not allow anyone with me. After the call, I start to have a panic attack.

As an autistic adult with medical PTSD and OCD, I need someone with me at appointments. I have trouble communicating and understanding everything that is going on during doctor appointments and tests. So I’ve always had a family advocate with me to help me during appointments. My family member often will help communicate to doctors what is going on with my health. When it comes to tests, it can be hard as I get very anxious due to my autism and previous medical trauma. Many doctors and technicians don’t always empathize or understand why I freeze up, which can cause frustration on both sides.

Due to my disability, I’ve spent my whole life in and out of the hospital, seeing doctors, and having tests done. Medical trauma has made me extremely anxious during tests. I’ve had instances where the technician didn’t know my particular heart condition and had trouble doing the echo because of it. One of the times I was in the hospital, my family had left just for a bit and a tech came in to do my echo and proceeded to push really hard on my chest to the point where I had a couple of bruises.

During these times, I tend to shut down. It’s like the voice I use to advocate for so many people becomes silent, stuck in my throat, and I lose the ability to talk. I’ve had doctors gaslight me and tell me that everything is fine when I was dying. My family provides clear communication and can explain my medical past as well as share the concerns I have talked about. They are the second set of eyes and ears and can remember more about appointments and keep notes when the doctor is talking too fast for me.

That night I get on a video call with my therapist, telling her about my cardiologist appointment and how they are saying I have to be by myself. I explain to her that I can’t go to my appointments without someone with me. She nods her head in agreement and we form a plan. She suggests that she writes a letter explaining that I need to have a family advocate with me during appointments and tests. In the letter, my therapist explains my diagnoses and how they affect me in medical situations. Her letter states that per the Americans With Disabilities Act, I need an advocate with me during medical exams and tests to help me.

The next day, I called my doctors and informed them that I had a letter from my therapist explaining my need for a family member to be with me at the appointment. They suggested that I make sure I had the letter with me when I got to the appointment and they would then put it in my file.

Although most doctor appointments and hospitals are allowing people to have a guest or someone with them now, I still run into appointments where they tell me I can’t have someone with me. My most recent was a pelvic ultrasound for my endometriosis. My mum was with me at the time and showed the technicians my letter. Once they finally let my mum come back with me, she asked why she wasn’t allowed with me. They told her that it was to prevent a patient and their person from saying that the doctor did anything inappropriate — that is why they have the technician and a nurse present. My mum told them that seemed wrong as then they have two people against the patient so it’s the patient’s word against two people? These are the instances when it’s so important to have someone with me.

Having the letter has profoundly helped me out. Doctors take their time explaining a bit more and they recognize my family members as a part of my team.